Tirosint-SOL Trial Results

[clethe]

While dealing with multiple allergies and eczema, I was casting about for other possible irritants and noticed that the excipients in my Synthroid, especially Acacia, could possibly be a culprit. My Endo agreed to trial Tirosint-SOL, which is virtually excipient-free. Have been on it about 2 months and am feeling horrible (worse hypo) even though labs look 'ok'. I felt 'better' on Synthroid and will ask her about all this next week at follow up.

I had been on 100mcg of Synthroid, but was told that since Tirosint might be more potent because of cleaner formulation, my Rx was for 88mcg Tirosint-SOL.

Daily, all of T4 and 10mcg T3 taken at 10PM (except not before labs), 10mcg T3 taken at 11AM (split before labs). Labs done according to protocol and at 8AM:

10-9-2024 (88mcg Tirosint-SOL, 20mcg Liothyronine)

TSH 0.006 (.45 - 4.50)

Free T4 1.43 (.82 - 1.77) 64.2%

Free T3 3.40 (2.0 - 4.4) 58.3%

7-30-2024 (100mcg Synthroid, 20mcg Liothyronine)

TSH 0.005 (.45 - 4.50)

Free T4 1.46 (.82 - 1.77) 67.4%

Free T3 3.30 (2.0 - 4.4) 54.2%

I am at a loss as to what to do next. My FT4 has reduced just a bit and FT3 has increased, but could be higher? My symptoms since on Tirosint-SOL are my classic HYPO - more sleeping/crashing, slower innards, worse fatigue, hair loss. Plus I get low BP and low glucose events when hypo, as well as blurry vision and ocular migraines.

I expect her to say it's all good because of the labs, but it's not. Any guidance would be much appreciated! 🙂

[Regenallotment Ambassador]

Poor thing this sounds rough.

are you able to get your vitamins checked?

B12, folate, ferritin and D?

My guess would be you are very low in at least one that is contributing to those symptoms.

Plus as you are symptomatic and have room for T4 increase maybe you are one of the people that needs FT4 higher in range to feel well?

good luck with your appointment, go in with a clear single aim, e.g. a trial increase of T4 for 12 weeks.

Also, where in the United States are you? Is it getting colder where you are? I need to adjust down slightly in summer and up slightly in Fall. 🍂

[clethe in reply to Regenallotment]

Thanks - Probably have to go back to square one with the Synthroid before I can get an increase ugh 😐 Supplementing all of above vits - B12 level is always way high.

It was hot here until two hurricanes passed by - now some cooler temps 🙂

[Regenallotment Ambassador in reply to clethe]

Oh blimey, hope you and yours are all OK, the devastation we see on TV news is awful. Stay safe 🙏

[231060]

Hi, so sorry to hear of all your suffering.. I have been diagnosed with hypothyroidism and I’ve been struggling for a year now with 13 gps telling me different things .. been taken off levothyroxine as was told I didn’t have thyroid problem … now after more blood tests have been told to start levothyroxine again.. I have eczema and my whole life has changed with sleeping anxiety migraine severe constipation… I noticed on the forum that no one mentions working. I’m a podiatrist in the NHS and I’m struggling at 64 to continue.. has anyone struggled and had to give up work ? Thank you so much.. any feedback would be much appreciated.

[clethe in reply to 231060]

You have come to a very good place - the struggles described over this disease from lack of proper medical care are just mind-boggling. I think you can DM the admins of this site for list of endocrinologists in your area. A 'good' endocrinologist could possibly offer better care than the GPs.

If you start a new post and provide your info for the forum, the members can provide feedback directly to you 🙂 I have found this forum to be invaluable.

[231060]

thank you so much and I will definitely do that.

[clethe in reply to 231060]

Finding a thyroid-knowledgeable endo can make all the difference in your level of care, but also how long it might take to get better. Took me nearly a decade to find one. Many are laser-focused on diabetes and give their thyroid patients little to no care or consideration. It seems criminal actually!

My doctor is young, well-educated and open-minded but occasionally has lapses that seem driven by institutional protocols that are outdated or disproven but still followed by many of her peers. The patient is put in a tough position - constantly fighting for their health.

[231060 in reply to clethe]

Thank you so much

[Clarrisa]

I recall once reading on this site that when a patient is completely new to taking thyroid medication they can feel worse initially. This I read was because any natural production of thyroid hormones they were still able to produce decreases before their medication has actually kicked in properly. Thyroid medications can be rather tricky …

I personally found Tirosint to be progressively dehydrating. So it seems whatever thyroid hormones I did have onboard could not have been circulating so great. I also wonder if when one’s thyroid labs are checked they read higher than they in fact are, due to some degree of dehydration (in my case).

Have you noticed any weight change? I also had dark shadows directly under my eyes, and believe they were from a measure of dehydration. I returned to Synthroid use (following the addition of a gluten free meal plan).

I use the white 50 mcg Synthroid tabs and score them as necessary, because they have less filers in them than other strengths. I still have symptoms, but cope better using concurrent acupuncture (which my health insurance has helped to finance).

[clethe in reply to Clarrisa]

Thank you , Clarrisa 🙂 Family members have had acupuncture for aches/pains with some success - what sorts of thyroid symptoms can be treated? Coping better is 👍

I was using the 50mcg x2 Synthroid as well, because of less fillers. I have not noticed any less itch/rash since switching to Tirosint-SOL, so the acacia filler in Synthroid may not have been a contributing irritant to my eczema after all - worth the experiment though to try and feel better.

My hypo symptoms on Tirosint-SOL include some weight gain in addition to the others listed above. As you note, dehydration could figure in, made worse by fasting and drinking very little water before labs. I also get non-diabetic hypoglycemia when fasting so the 30-minute drive to the lab is always exciting!

FYI - those who are not familiar: The small plastic vials containing the single doses of SOL are designed so you twist off the top part and then squeeze the middle part in order to drop the solution into a small cup of water (or directly into mouth), repeating the squeeze a few times until you think it has all drained out. This process did not convince me that I was getting the full dose, but who knows? 🥴 Then there is the issue of wasteful plastic packaging added to the landfills. If I were to continue Tirosint, the gel caps would be preferable, and am not allergic to the gel caps as they are included with many of my vitamins.

However, I am leaning toward switching back to Synthroid 100mcg rather than upping the 88mcg Tirosint to 100mcg. Will see endo Tuesday to discuss.

[Clarrisa in reply to clethe]

I actually started acupuncture in desperation, but after receiving a emailed food recall notice the other day now think my symptoms were more related to food poisoning. I have continued acupuncture with no plans to stop, because I feel more focused, and I am making progress on deferred household maintenance. So mostly I’ve noticed improved attention, with increased initiative. I am hopeful my dental situation will also get better, but will not know until this December when a follow up is planned.

[marceen]

All docs just go by numbers..............I have taken only 50 mg for many years......but he finally said that I had hashimotos..........another variant for which there is no cure. (autoimmune) The autoimmune part could be expressed in psorosis (sp?). One thing to check is the other blood indicators......I had my parathyroid out and this stopped my osteoporosis downward spiral "instantly"......a different gland with different functions but still it was causing havoc. Keep researching. In the US you can order your own lab tests - self pay but still I was able to order a full thyroid panel whereas the doctors seem to want to "save their money" (???) You don't need to focus totally on T3 and T4. I might not be much help....

[clethe in reply to marceen]

Yes, documented skin problems with Hashi's - after discovering the online lab, I've been able to check on some allergies - very helpful since, like you said, the doctors scrimp on testing. In US it's the insurance companies goal to spend as little as possible on the patients, who are making them wealthy by way of insurance premiums and Medicare.

That is wonderful you were able to halt the osteoporosis! Not recalling parathyroid function. Had numerous metabolic tests years ago, will look at those again.

[marceen in reply to clethe]

Yes............I went to a speciality clinic (the norman clinic) for the parathyroid surgery (self pay because I personally did the research and my bone density was dropping and I had broken my wrist already. (if you ever have this be sure to check the heavy heavy side effects with prolia (doctors like this???) - horrible)......The norman clinic surgery very easy since they do thousands and have "lots of practice" but the normal gland size is the size of a pea......mine was over an inch and the doc just scanned over that fact even though I had an ultra sound. Psoriasis can be genetic and my mom had it and just controlled it with a cream but it is also in the autoimmune category.....??? So don't discount basic genetics???

[Clarrisa in reply to marceen]

I wondered if you presented lab wise as a clear cut classic hyperparathyroid case? I have read some (lab) presentations do not even show elevated calcium levels. Congrats on getting a handle on your parathyroid situation.

[marceen]

indications was mostly "high calcium in the blood and also PTH" Yes, I did a specific "thyroid panel" for the blood work. This was a self pay/self referral to a lab here in the US (Lab corp). Very obvious because the leached calcium just drains into the blood. These two items are the indicators and totally important to get at a lab - the PTH test has a short half life so they have to test it quickly (have the right equipment to test quickly)....soooo the lab has to have the capability to analyze and the doctor has to usually order - in my case he didn't and so I had to self pay...............